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Friends,

I just had my appointment with Dr. Mehta in Albany and I was more impressed with the other patients that were here than anything else. I had a doppler that came back negative for reflux, but he admits that it is only 50/50 at the best of times. (I’d rather just have the venogram to be sure)

FYI - Mehta will only do on vein at a time, so it would take a few trips to Albany and back to get it all done. He is offering a straight-up procedure, and a trial procedure as well. Due to the fact that i may never get treated in the trial, I would have opted for the former. Hopefully they can take my place and fill it with someone else!

One fellow in the waiting room was getting his second procedure (other vein that was not liberated the first time) and he described how great the procedure was the first time. He had all of his cog fog diminish, vision cleared up, and much better balance – he was in a great mood! According to him, host of the results were on the table with a jump in improvements two days after – he then stabilized after that.

That’s about it – its snowing hard in Albany and they are de-icing planes and that is enough for a southern guy like me to take a xanax!

Sorry...
That is funny! I live in Canada & it is sunny, T-shirt weather right now. No snow YET for us but I know that I'm living on borrowed time in that dep't!
When do you go back for the venogram? So good to hear about the benefits some have received - Thanks for the post - got a chuckle out of the Snow story!
D

Thanks for the update. I have a couple of questions for you.

You say that you didn't show any reflux but what about the other 4 of the 5 indicators of CCSVI?

You are going home. Is that it for you? Did Dr. Mehta offer any options?

Lastly, did you know that he only did one vein per visit? I've never heard this before. I find it hard to believe that people would fly to Albany and then find out that they cannot get the full treatment in one visit. Please explain a bit further.

Bruce.

Thanks so much for the update, rssugg. Didn't realize that Mehta just did one side at a time! Can't say that appeals to me. Did you have to travel up to Albany just to find this out? Too bad they couldn't have told you ahead of time!

The negative results must be disappointing. That possibility is one reason I've decided to go straight for the "gold-standard" catheter venogram, if Siskin, Sclafani (or whoever) will permit that. I realize that, if I go to the expense and trouble of a Doppler ultrasound and/or MRV, and they are negative, I wouldn't believe the results, because of the existence of so many false negatives, and the prevalence of CCSVI in MS patients. So I'd be going for the catheter venogram anyway, and why not just skip the preliminaries? After all I've read, I'm convinced I have vascular issues, and want them addressed as efficiently, effectively and safely as possible. Definitely a risk/benefit calculation for each person, which may yield varying decisions, especially this early in the CCSVI learning curve.

Don't know how bad your symptoms are, but mine had been worsening (after some years of improvement and stability using complementary approaches); that's why I was back to researching MS info on the internet over the summer. At first CCSVI was seeming like THE way to go, till I started reading of possible additional deaths, and people who experienced WORSE symptoms after treatment. Now, before actually going for the procedure, I've re-introduced some nutritional elements I had dropped due to cost, but which had helped me tremendously starting in 2003. We'll see what happens.... If my symptoms keep progressing, I'll probably do the CCSVI treatment sooner rather than later. Being somewhat the cautious type (I definitely don't want to end up worse!), I'd like to go with a doctor who's got good experience with CCSVI, is not quick to stent, and considers the risks carefully.

Wishing you well.

PS Haha. Sorry about the long reply - hadn't intended that!

I thought for out-of-towners, Dr. Mehta was doing one jugular one day and the next the next day? For people who live close, he is doing them two weeks separate.

Rssugg, with it being negative for reflux, did Dr. Mehta still give the option of getting a catheter venogram?

I had an appointment (ultrasound and consultation) with Dr. Mehta last Tuesday. He also explained to me that he only does one site per procedure also. The negatives on that is that you'll be exposed to more radiation and multiple invasive "surgeries" if you have to go through three procedures. The positive would be is that he could check for restenosis from the first procedure during the second procedure. I guess I'll probably end up going through at least one procedure, and if I don't feel any improvement than I could always forgo any other ones. I'm waiting for a predetermination from my insurance before I procede...could take a week or two.

If anyone else has gone though this procedure with Dr. Mehta, I sure would like to see any details you could share.

You say that you didn't show any reflux but what about the other 4 of the 5 indicators of CCSVI?

We didnt go into that discussion.

You are going home. Is that it for you?

I have other irons on the fire, but I can always have Mehta do the venorgram/angio.

did you know that he only did one vein per visit?

Actually, I found that out about an hour before my flight left. It was posted on CCSVI locator.

The negative results must be disappointing. That possibility is one reason I've decided to go straight for the "gold-standard" catheter venogram, if Siskin, Sclafani (or whoever) will permit that. I realize that, if I go to the expense and trouble of a Doppler ultrasound and/or MRV, and they are negative, I wouldn't believe the results, because of the existence of so many false negatives, and the prevalence of CCSVI in MS patients.

Not too disappointed - the odds arent in your favor. They should just skip the doppler junk and go straight to roto-rooter mode!

I thought for out-of-towners, Dr. Mehta was doing one jugular one day and the next the next day? For people who live close, he is doing them two weeks separate.

He did not indicate this - I was under the understanding that they need to be just a few weeks apart. I could be wrong.

with it being negative for reflux, did Dr. Mehta still give the option of getting a catheter venogram?

Yes

There's been a sudden turn on Facebook, with a few comments about not going with Dr. Mehta or bad info about Dr. Mehta, what is that all about! He has been upfront since he started doing CCSVI procedures in August that he does one at a time but I would have hoped this would be fully explained to anyone going with him. Every indication I've had is that he is a fine doctor, on the conservative end of the spectrum, and with a different perspective than our other docs as he is a vascular surgeon and not an IR. Rssugg, wishing you the best with whatever doc you go with.

I noticed that last night Cece ... most of the posts came from one person though (so I didn't pay much attention).

I agree what he is doing is conservative, (one vein at a time - in case the vein closes up and can't be saved, it leaves one salvaged).

I'm not sure the comments that I saw ... It also appeared to be mostly Candians coming into the country? I don't know ... everything I've heard from anyone who has been there is that it was a good experience (with some pretty good results).

I hope my posts arent construed as downing Dr. Mehta - I felt he was a kind and understanding doctor. His patient that went through the procedure said all good things about him.

I wanted to give my perspective.

If I was closer to the NY area, had money to travel to Albany multiple times, or was Canadian - I would jump at the chance to go to Dr. Mehta!

Fortunately, I have some other options and I would recommend anyone that can go see Dr. Mehta - please do so.

no, rssugg, not at all...it's comments on Facebook that have been negative toward Dr. Mehta in the last twenty-four hours without any explanation for why.

oh - i dont scan the FB stuff (I can barely digest tims and dont have access to fb at work - thank goodness!)

I noticed a bad attitude at CCSVI locator though

Ok, just checked out the accusations on CCSVI locator. It seems to me irresponsible to be smearing Dr. Mehta's name. The accusations are primarily financial, objections to Dr. Mehta's one-vein-at-a-time policy, and a report of a bad outcome.

Starting from the easiest:

1 - every doctor has had at least one bad outcome in their patients thus far, tell me a doc and I'll tell you the story

2 - Dr. Mehta's one-vein-at-a-time policy needs to be clear upfront but after that, he's the doc and he sets the rules, and if we disagree we should go with another doc. I do not believe doing one vein at a time is necessary but none of the research has been carried out and I believe Dr. Mehta is honest in his belief that it is necessary.

3 - he is charging too much money. From what I read, if you are paying out-of-pocket or have a high deductible or copay, it may be prudent to choose another doctor. A hearsay figure on the CCSVI locator page was that a Canadian was charged $30,000 but another report was $18,000. A lot of figures got thrown around, I think it may indeed be more expensive through Dr. Mehta if only because he charges for two separate procedures.

Please correct me on these if anyone knows more than I do, this was a quick summary....

hi all,
i just spoke with Dr. Mehta's secretary this morning. His practice definitely does just one side at a time, to be safe. And the ultrasound is a separate visit. I live two hours south of Albany. That is a long drive and I do not travel well, so I am disappointed.
But... it sounded like I could get an appointment in a manageable amount of time. Of course, I have already waited two months for the callback. I have gotten so much more ill since the end of August.
I'm also nervous about the procedure being done based only on ultrasound. Dr. Sclafani sure sounds like he knows what he's talking about when he says that a venogram is the gold standard.
I'm hoping that Dr. Siskin will call back soon.

elyse_peace wrote:I'm also nervous about the procedure being done based only on ultrasound. Dr. Sclafani sure sounds like he knows what he's talking about when he says that a venogram is the gold standard.

From what rssugg said, an ultrasound is done but the procedure will be done regardless of what the ultrasound shows. When Dr. Sclafani says the venogram is the gold standard he is not referring to the MRV but to the catheter venogram, which is the procedure itself.

Sorry to hear you are feeling ill.